Exploratory study: barriers for initiation and/or
discontinuation of breastfeeding in mothers of children with down
syndrome.

Abstract:

Background: The aim of the study is to identify the barriers
associated with Breastfeeding in mothers of Puerto Rican children with
Down.

Method: A non-probabilistic sample (n=26) of mothers was used in
the study. The sample was obtained in an institution in Puerto Rico
specializing in care of infants with Down Syndrome [IDS]. A
self-administered questionnaire was used consisting of six sections.
Descriptive statistics were used for data analysis.

Results: The majority of interviewed mothers (80.8%) had 70.0% or
higher correct answers regarding the benefits of Breastfeeding. 84.6% of
the mothers who decided not to breastfeed or who discontinued
Breastfeeding reported as the main reason that the baby presented
sucking problems and 50.0% of the participants were not allowed to have
their baby with them during their stay in the hospital. 84.3% of the
participants indicated having breastfed their IDS and 61.5% stated that
they would not breastfeed in public places.

Conclusion: Active support, instruction, and collaboration among
members of the health care team are essential for Breastfeeding success.

Down syndrome is identified in 1/800 live births of all races and
economic strata (1). In Puerto Rico it has been identified in 9/10,000
live births (2). Infants with Down syndrome (IDS) are difficult to feed
since they present certain health conditions at birth that are barriers
for Breastfeeding (3). According to the National Institute of Child
Health and Human Development [NICHD] (4), IDS have hypotonic or muscular
tension deficiency. Also, due to this reduced muscular tension and a
prominent tongue, Breastfeeding of the IDS usually takes more time.
Likewise, the hypotonic muscles can affect the digestive system, causing
constipation. It is important that the ISD be breastfed frequently.
Nevertheless, the mother should keep in mind that these IDS, due to
their hypotonic condition, cry and kick less. Therefore, they can demand
the breast less intensely than other children (5).

The suction problems related to hypotonia or heart defects can be
problems in Breastfeeding initiation, particularly in premature children
(6). The IDS with heart defects may need to be fed frequently, but in
shorter periods since they are more vulnerable to fatigue and shortness
of breath (7). In addition, more than 50% of these children have ocular
and auditory problems such as strabismus, myopia, and hypennetropia (8).

From the digestive point of view, among 10 to 12% of IDS are born
with intestinal malformations that will require surgical repair (8).
Vomiting and the absence of depositions in the first days of life are
characteristics which point toward that pathology. Breastfeeding can be
difficult due to the hypotonia (8). An ID S is usually drowsy during the
first weeks and may have a very weak suckling reflex; therefore, it is
imperative that breastfeeders have additional patience (7).

The medical care of the IDS and Breastfeeding will include the same
pediatric care that healthy babies receive during the first year of life
(4). However, in comparison with the general population, IDS have a
mortality rate due to infectious diseases 12 times higher, if treatment
is not obtained promptly (4). Also, IDS have a higher probability of
developing chronic respiratory infections and otitis media infections.
Pneumonia incidence is 62 times more likely in IDS than in the general
population (4). In this regard human milk should be a priority for this
population. The La Leche League International (9) informs that
Breastfeeding is the best way of feeding the IDS, just as it is to the
rest of the children. Moreover, Breastfeeding the ISD is even more
important because it provides extra protection against the development
of infections; it improves the coordination of the language and the
mouth; it promotes the stimulation of tact and it maintains the
baby's alertness. Nevertheless, many mothers face difficulties at
the moment of breastfeeding their IDS.

The most recent statistical data of the Puerto Rico Department of
Health reveals that 93.5% of Puerto Rican women express their intention
to breastfeed, and that 65.5% breastfeed at the hospital (10). Several
studies have presented some of the barriers for breastfeeding initiation
among Puerto Rican women (11-13), but we did not find published
literature on the barriers associated with breastfeeding in mothers of
Puerto Rican children with Down syndrome, this being the principal
purpose of this study.

Methodology

Human rights

This study was approved by the Institutional Human Subjects Review
Committee of the Medical Sciences Campus at the University of Puerto
Rico.

Design and sample

The design used for this study was pre-experimental and cross
sectional to identify the barriers associated with breastfeeding in
mothers of Puerto Rican children with Down syndrome. A universe of 26
Puerto Rican mothers whose infants were receiving health services in one
specialized institution for IDS participated in this study.

All mothers participating in this study signed an informed consent
form. Participants were recruited by the institution's staff
personnel.

Inclusion and exclusion criteria

Eligibility for participation in this study for mothers was
determined by means of the following inclusion criteria: a) biological
mothers of Down syndrome babies of 12 months of age or less; b) who
could read and write Spanish; and c) only had one child diagnosed with
Down syndrome.

Data collection procedure

Data was gathered by means of a semi-structured questionnaire that
included closed and open-ended questions in the Spanish language. The
interviews were carried out by one interviewer. The data gathered by
means of the interview included data related to: a) the sociodemographic
characteristics of the mother; b) information on the infant and his/her
condition; c) information on the pregnancy and birth of the IDS; c)
knowledge of breastfeeding benefits; d) mother's breastfeeding
experience; e) barriers encountered for initiation of breastfeeding; and
f) attitudes toward breastfeeding in public places.

Each interview session was 20 to 30 minutes long. The completed
questionnaire was revised by the principal investigator before being
entered into the computerized database. Double entry of data was carried
out to minimize data entry errors.

Description of instruments

The questionnaire was designed from previous instruments used by
the authors' research team in this type of community and other
researchers in the breastfeeding field. Two scales were included in the
questionnaire:

* Knowledge Scale on Breastfeeding Benefits. This scale was
comprised of 13 premises regarding breastfeeding benefits with a nominal
scale (Yes, No, and I do not know). This scale showed a Cronbach alpha
of 0.83.

For the purpose of analysis, knowledge premises were categorized as
(1) correct and (0) incorrect, and were then added up. The "I do
not know" premise was considered as an incorrect answer in the
analysis. Knowledge was considered adequate when 70% of the premises
were correct and inadequate otherwise (14). The type of breastfeeding
was defined as per Labbok and Krasovec (15).

* Attitudes toward breastfeeding in public places. This scale was
comprised of 16 premises with a nominal scale (Yes and No) regarding
public places where the participants would breastfeed. This scale showed
a Cronbach alpha of 0.70.

For the purpose of analysis, premises regarding attitudes were
categorized as (1) Yes and (0) No, and were then added up. To more
punctuation in the scale more positive is the attitudes toward public
places breastfeeding (16).

Statistical analysis

All data was entered and analyzed by means of SPSS for Windows
11(17). Being an exploratory study consisting of a small number of
participants, only descriptive statistics such as frequency
distributions and percents were applied to data analysis.

Results

The mean age of mothers was 33 years (SD=5.17) with a range from 23
to 45 years of age and 65.4% of mothers were 33 years or older. The
median school years completed was 13 years (SD=1.4) with a range between
9 and 16 years. We found that 57.7% of participants had a bachelor
degree or higher (Table 1).

We found that 53.8% of interviewed mothers reported the pregnancy
lasted 8 or 9 months. Primiparas accounted for 30.8% of the mothers;
38.5% indicated they knew in advance that their baby would be born with
Down syndrome. The mean postpartum days of hospitalization was 3 days
(SD=0.90). Hospital stay was between 2 and 3 days for 88.5% of the
mothers (Table 1).

Among participants, 84.3% indicated having breastfed their IDS.
Breastfeeding of the child with Down syndrome had begun in the hospital
in 72.7% of the mothers who breastfed and breastfeeding initiation
occurred 1-3 weeks after birth in 90.9% of the cases. Feeding directly
from the breast was carried out by 82.4% of mothers who gave their milk
to their babies. Of those who fed directly from the breast, 54.5% did it
on a daily basis (Table 1).

Forty five point five percent (45.5%) of the participants breastfed
their child exclusively. It should be pointed out that 78.6% of the
mothers weaned their babies between 1 and 6 weeks of age. Likewise,
mothers reported that 53.8% of their babies were female (Table 1).

Associated health conditions affected 53.8% of the babies and the
most frequently associated conditions were: cardiovascular problems,
respiratory illness, gastrointestinal disease, among others. The median
duration of NICU stay was 3 days with an interval ranging from 2 to 48
days, and the mean number of daily visits by mothers to the NICU was
two. The number of visits fluctuated between one and 6 daily visits.
Specifically, 63.6% of interviewed mothers visited the NICU twice daily
and 27.3% did so once daily (Table 1).

Breastfeeding Benefits Knowledge

The majority of interviewed mothers (80.8%) had 70.0% or higher
correct answers regarding the benefits of breastfeeding. Analysis of the
premises showed that 100% of the participants knew that human milk
provides benefits to the baby, including antibodies against diseases. We
also found that 73.1% knew that breastfeeding reduces breast cancer
risks in the mothers (Table 2).

Nevertheless, the participants were unaware that: 1) human milk
protects the baby against respiratory illness (53.8%); 2) breastfeeding
can serve as a contraceptive method during the first 6 months if babies
are fully breastfed and postpartum amenorrhea persists (53.8%); 3) human
milk provides the best nutrition to the baby (92.3%); 4) the quantity of
human milk production does not depend on breast size (96.1%); and 5)
human milk should not be alternated with artificial milk (84.6%) (Table
2).

Barriers for Initiation of Breastfeeding

84.6% of the mothers who decided not to breastfeed or discontinued
breastfeeding reported baby sucking problems as the principal reason for
this decision. Other barriers identified in the study were issues
related to health care personnel. It was observed that 50.0% of the
participants were not allowed to have their baby with them during their
stay in the hospital. Also, 30.8% of the participants stated they
received no support from hospital personnel on breastfeeding a baby with
Down syndrome.

Attitudes toward breastfeeding in public places

Among study participants, 61.5% stated that they would not
breastfeed in public places. Among the reasons mentioned for not
breastfeeding in public were: lack of knowledge, uncomfortable,
preference for the use of bottle.

Discussion

The principal barrier for initiation and/or discontinuation of
breastfeeding among study participants was related to suckling problems.
Infants with Down syndrome are likely to have hypotonia and frequent
drooling which makes more difficult the achievement of an adequate seal,
adequate negative pressure, and an adequate suckling mechanism (3).
Nevertheless, this should not be a reason to deprive the infant of the
benefits of breastfeeding. Moreover, one study of 59 babies with Down
syndrome recorded that 31 infants had no problem establishing
breastfeeding, although a severe cardiac anomaly was associated with
ineffective suckling (5). Merewood and Phillipp (5) explained different
strategies to manage the suckling problems in Infants with Down
syndrome. In terms of position, the clutch or football hold can be
useful. These positions allow an upright baby, the baby is more likely
to remain awake, the mother can see the infant's mouth clearly on
the breast, and she can support the head well.

Other barriers to inititation and/or prolongation of breastfeeding
were identified among participants such as: poor support by NICU
personnel (18) and physical distance between the mothers and infants
during their stay in the hospital (19). Orientation should be provided
to those closest to the mother in areas such as: the NICU routines, the
importance of the closeness to the mother's room, number of daily
visits allowed to the NICU, and the proper environment in NICU (20). It
should be noted that the participants had an adequate knowledge about
the benefits of breastfeeding.

A negative attitude toward breastfeeding in public places was
observed. Donelda (21) and Forrester, et al. (22) observed a decrease in
the percent of support for breastfeeding in public places. Cultural,
social and religious factors could explain this negative attitude among
participants. It is important to develop research in this area to try to
explain this finding.

This study was limited by sample size (n=26) of the mothers of
infants with Down syndrome and may not be generalizable to the whole
population. Infants with Down syndrome can breastfeed. These infants
usually exhibit poor muscular tone at birth and breastfeeding helps them
to strengthen muscle tone. It is important to be patient when
breastfeeding these babies, since the process can be difficult due to
the multiple health problems, especially suction problems, presented by
these babies.

Various interventions, largely aimed at overcoming the difficulties
associated with hypotonia, would improve the breastfeeding experience
(23). In order to initiate and maintain breastfeeding, these mothers
need early and effective assistance in the initiation of the process.
This should include special techniques for latch-on and extraction of
mother's milk. Also, stabilizing the head and the neck is
particularly important in infants with Down Syndrome, because there
might be malformations or laxity of the ligaments of the first two
cervical vertebrae (atlanto-axial instability) that can put pressure on
the brainstem or spinal cord with head flexion or excessive extension
(24). The Dancer hand position can benefit many of these babies because
it stabilizes the jaw and supports the masseter muscle, which decreases
the intra-oral space and enhances the generation of negative pressure
(23). In order for the mother to develop a good milk supply it is
usually necessary that she pump or express her milk frequently if the
baby is not taking the breast well (23). Active support, instruction,
and collaboration among members of the health care team are essential
for breastfeeding success.

(9.) La Liga de la Leche Internacional. Is it possible to
breastfeed my baby who was born with Down syndrome? 2004. Retrieved
April 4, 2008. Available at: URL:
http://www.lalecheleague.org/org./FAQ/down.html.

* Maternal & Child Health Program School of Public Health
University of Puerto Rico, ([dagger]) University of Puerto Rico, Rio
Piedras Campus, ([dagger][dagger]) Environmental Health Program, School
of Public Health, University of Puerto Rico, Medical Sciences Campus